My friend Cheryl and Ramsay Hunt Syndrome 

Kelsey: How did you know something was wrong and what were your symptoms?

Cheryl: I was 37 weeks pregnant, trailing into my upcoming birth when I started having a piercing inner right earache for about 3 days. I’m an RN and was working evenings and remember asking one of my fellow nurses to examine my ear with no findings.

Kelsey: What did you do when you knew something was wrong?

Cheryl: I went to bed that night and woke up around 3am. My right side of my face felt weird though as it was early am I fell back to sleep.  When I woke up, I knew something was wrong. I looked in the mirror and to my surprise my face looked like I had a stroke. My right eyelid wouldn’t close. The right side of my face from upper forehead to lower neck was paralyzed. I had facial droop with no feeling and unable to smile. My swallowing was affected, and I couldn’t close my mouth properly. 

Kelsey: What did the doctor do? 

Cheryl: Steve came with me to the ER and with examination I was told I had Bells Palsy. In the next days to follow I developed shingles also to my ear.  I was referred to see an EENT specialist who then diagnosed me with Ramsey Hunt Syndrome. Ramsay Hunt Syndrome is caused from the herpes zoster virus which causes shingles. It affects the facial nerve near the ear and leads to facial paralysis and hearing loss.  This was very difficult news as due to the severity of my facial paralysis and the nerve damage that had happened, I was told that it was permanent.  I was devastated in knowing what I would do if I physically couldn’t smile along with the loss of physical function my window to the world just became a bit smaller.

Kelsey: How long did it take to recover and what was your recovery like?

Cheryl: I was referred to a surgeon for assessment for possible facial reconstruction. At this appt I was told that surgery wasn’t indicated.  I was informed that the nerves slowly heal themselves though only at 1 mm a month so thus the road of slow healing.  I was referred to the Glenrose Hospital of which I had many appointments of nerve conduction studies.  These appts were hard as there was no recovery for some time.

I had to have 2 separate surgeries to put a gold weight in my right eye to close my eyelid.  As I was still taping my eye closed the gold weight would allow for closure of the eyelid so my cornea would be protected. I had my first surgery approximately a month after my delivery. The gold weight though was not the right weight so approximately 5 weeks after I had the second surgery with the exact gold weight needed.  I continued with acupuncture physio twice weekly in Tofield for months. The acupuncture was to stimulate the nerve movement.  I was so blessed to have a physiotherapist whose skill set enabled me to try new treatments and not give up. 

Over the months to follow I would eat on my left side of my mouth as I would choke. I developed crocodile tears of which you cry when you eat. As I had no movement from my forehead to my neck, I became protective of my face.   At the three months mark I remember coming home from a nerve conduction study feeling very low as there was no change to my face.  I remember though seeing the smallest indentation in my dimple and this gave me hope. 

I was off work as on maternity leave and over the course of 18 months my nerves began to heal that 1mm per month and I slowly regained function in my face.  At my last nerve conduction study the test still indicated no change to my facial nerves.  They felt that the nerves to the left side of my face had crossed over thus gaining new function. At the year mark I was able to surgically remove the gold weight implant as I had regained function and my eye would now close naturally.

I have had long term facial neuralgia, my smile is not symmetrical and I still have the good old crocodile tears. I’m most grateful that I regained my facial function and thankful for prayers and family supports along the way. 

Kelsey: What is your job?

Cheryl: I have been a RN for 28 years of which I’m so grateful for my recovery as at the time of my injury I questioned if I would be able to continue in my career.

Kelsey: Where did you grow up?

Cheryl: I was a farm kid from Killam, AB

Kelsey: What are your hobbies?

Cheryl: I love to garden and create beautiful spaces. I enjoy hiking moderate trails enjoying the beauty of the outdoors and the challenge of climbing to the top, kayaking, travels and entertaining and cooking.

Kelsey: How many kids do you have and what does your husband do?

Cheryl: I have two daughters Raelene and Katie that are in post-secondary education now enjoying new opportunities. Steve, my spouse is a Renaissance artist and self-employed in construction.

Kelsey: Where have you travelled? 

Cheryl: At an early age with the girls, we wanted to expose them to the benefits of travels.  We have been to Eastern Caribbean, Turk and Cacaos, Florida Keys, Bahamas, multiple trips to PEI, along with travels to Nova Scotia, Ireland and Scotland, trips to Montana, Las Vegas, Mexico, Victoria, Vancouver, along with the beauty of our own Banff and Canmore trips. 

Kelsey: Is there anything else you would like to explain or talk about your experience?

Cheryl: As I age there are so many unknowns in life, but I have learned that gratitude, faith, determination, and family provide the pathway for dealing with difficulties.  There are many blessings every day. Look for them and know that life is beautiful.

When I was probably around 8 years ago, we went to the same church as Cheryl and her family! Cheryl became good friends with my mom! I didn’t know that Ramsay Hunt Syndrome was something that you could get when you get pregnant before we met her and her family!  Thanks so much for your interview and your friendship over the years!  I hope people will learn something interesting about Cheryl and her family!

Here is the information I found on Ramsay Hunt Syndrome on the internet.

https://www.mayoclinic.org/diseases-conditions/ramsay-hunt-syndrome/symptoms-causes/syc-20351783



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